Downloadable images:

Screen shot of DRUM app question asking participants whether they took their medication.

Screen shot of DRUM app question asking study participants about why they drank (if they answered yes to the previous question asking if they consumed alcohol in the past 24 hours).

Sarahmona Przybyla, clinical assistant professor of community health and health behavior at the University at Buffalo.

BUFFALO, N.Y. – Would people living with HIV be willing to
self-report on daily substance use and antiretroviral therapy (ART)
adherence using a smartphone app?

That was a question researchers from the University at Buffalo
set out to answer in a recent study. They were pleased to find that
participants not only found the app easy and convenient to use
— they were also willing to provide honest responses.

“Reporting was actually high – we had 95 percent
compliance with daily report completion. A key finding of our study
was the ability for people living with HIV to feel comfortable
reporting on sensitive health behaviors,” said Sarahmona
Przybyla, the study’s lead author and clinical assistant
professor of community health and health behavior in UB’s
School of Public Health and Health Professions.

A willingness to report the use of alcohol or drugs was
significant because substance use is one of the most reliable
predictors of poor adherence to ART, the researchers note.

Their findings, published this month in the journal AIDS
Research and Treatment, were more surprising considering that
the majority of the 26 study participants had never used a
smartphone before. After some initial smartphone training from
research staff, they completed their reports with ease.

Participants were recruited from two Buffalo-area clinics and
were asked to use the app — named Daily Reports of Using
Medications, or DRUM — to complete their reports, which took
three to five minutes, between 4 p.m. and 6 p.m. each day for two
weeks.

Every afternoon, the 26 study participants received a text
message reminder asking them to fill out their report. If they
missed that day’s report, they were given the option to do a
make-up when they logged into the app the next day.

Researchers were deliberate in their wording of the questions.
“People living with HIV continue to be a stigmatized
population, so we didn’t want any of the questions we
developed to draw attention to their disease. We never used
‘HIV’ or ‘ART’ – anything that would
inadvertently out someone as having HIV,” said Przybyla, Phd,
MPH.

A sample medication question was, “Did you take your first
dose?” A change in daily routine was the most commonly
reported reason participants didn’t take their medication,
followed by simply forgetting. Use of alcohol or drugs was the
third most common reason.

Participants who confirmed they had used alcohol or drugs in the
past 24 hours were given a series of follow-up questions that asked
why they used the substance and where they were when they used it,
with a dropdown menu of answer choices.

Each participant was provided with a five-digit passcode to
access the app, ensuring privacy and confidentiality. Data from the
completed reports was sent in real time directly to UB’s
Research Institute on Addictions, which helped develop the app
along with Przybyla. The study was funded by RIA's Howard T. Blane
Director's Award for the Development of Innovative Research in the
Addictions.

In the future, the app could aid in users’ decision to use
alcohol since some participants in this study reported that it
helped them understand exactly how much they were drinking.

And it helped users establish a pattern. “I think the
surprising thing is how much the app and the text reminders helped
the participants to develop a routine,” said Rebecca
Eliseo-Arras, a study co-author and senior research analyst at
UB’s Research Institute on Addictions.

“For instance, some reported that the text message
reminded them to do the report, but the report actually made them
think about whether or not they took their medication and, if they
didn't, that it prompted them to go take their medications," added
Eliseo-Arras, PhD, MSW.

Participants completed 347 out of 364 possible daily reports
over the two-week span. They reported drinking alcohol on 51.6
percent and marijuana use on 35.4 percent of reporting days.

In follow-up interviews after the two weeks, researchers asked
study members about their experience using the app. “Many
said it was a piece of cake and that they actually looked forward
to doing their daily reports,” Przybyla said. “We also
asked people where they were when they completed their reports. A
lot of them said they were out and about. They never felt like they
had to go hide in a bathroom to fill out the survey each
day.”

Przybyla said it’s important to note that the average time
since diagnosis among study participants was 17 years and that many
of their friends and relatives were likely aware they had HIV. As a
result, participants probably felt more comfortable completing the
reports around others than someone who was more recently diagnosed
and may not have been open about disclosing their disease status to
others.

Three-quarters of the sample was male, and slightly more than
half were African American. The average age was 48.

The app could help lead to quicker intervention in cases where a
patient has missed a number of doses.

“Life expectancy has changed dramatically as a result of
advances in pharmacotherapy, which is wonderful, but adherence is
key. You can live a long, healthy life with HIV, but you have to
take your meds,” said Przybyla, who is interested in studying
the role mobile technology can play in understanding health
behaviors.

“Now that we have this data, we can reach out to people
with HIV and say, ‘We’ve noticed you’ve been
using substances and that seems to be related to the fact that
you’ve missed your doses — what can we do to help
you?’ It’s putting prevention in their
pockets.”